When Terran, 14, passed out in school, an ambulance took her to the hospital. Scans revealed two large blood clots in her lungs and a large tumor in her abdomen.
Her diagnosis of mesothelioma came as a shock—not just because the cancer is rare but because it typically affects older adults, mostly men, who have been exposed to asbestos.
The prognosis for mesothelioma is dire, and few places specialize in treating children with the disease.
“Mesothelioma in pediatrics is very rare,” says Dr. Rosandra Kaplan, an investigator at the NCI Center for Cancer Research’s Pediatric Oncology Branch and head of the Tumor Microenvironment Section. “It requires a lot of expertise, and the expertise is very limited in the places in the world that do this. And the NIH is one of the places, and that’s why she came here.”
Although Terran’s surgery successfully removed her tumor, some of her lymph nodes and areas near her liver showed additional cancer cells. Terran’s best chance to beat her rare cancer was a newly opening trial.
“I was only 15 years old at the time,” she recalls. “I was still going to school. I guess the fact that it could work made me want to do it more.”
Terran became the first patient to try a medication called pexidartinib for her type of cancer. The results have been astounding.
“Terran is amazing, and she is doing very well,” Kaplan says. “There is a lot of uncertainty still. Her response to the trial has been remarkable.”
Besides getting the most advanced care for her rare cancer at NIH, Terran is excited that her clinical trial participation means she’ll be paving the way for other young people to benefit from the same treatment in the future.
Thanks to her successful treatment, Terran today is a sophomore at Morris College in Sumter, South Carolina, majoring in communications. She returns regularly to the NIH and The Children’s Inn for checkups, accompanied by her father, Terrence.
While father and daughter have always been close, cancer has brought them even closer. When Terrence also was diagnosed with cancer a couple of years ago, he chose to join an NCI clinical trial for his treatment as well.
“I was so impressed by the care that Terran got at NCI, so I knew that is what I wanted to do too,” he says.
Because you care, The Inn has been able to provide Terran and her family with a comfortable, nurturing place like home. Over the past six years, Terran and her family have come to The Children’s Inn regularly for checkups at the NIH. Since Terrence’s cancer diagnosis, father and daughter have been scheduling their follow-up appointments at the same time, so they can spend time together at The Children’s Inn.
“There are very few words that can explain how important The Children’s Inn is to my patients,” Kaplan says.
“I can just go up to the front desk and be like, “Hi, what’s up?’ and then we’ll just have this full-on conversation about anything,” Terran says joyfully. “The Children’s Inn and its energy – you honestly cannot help but fall in love with it.”
“I would like to say thanks to everyone here at The Children’s Inn, from Miss Jennie, the CEO of The Children’s Inn, all the way down to the cleaning crew,” Terrence says. “We want to say, ‘Thank you’ for everything you do.”
“We’re grateful she [Terran] is still with us to this day,” Terrence adds.
Thank you for being there for Terran and her family, and thousands of children and families like them!